MDS Patients Forum

This is a folder for MDS patients and carers wishing to share their own personal experience regarding nutrition and the use of different supplements to help with general health. MDS UK does NOT endorse or recommend any products that may be mentioned here.MDS UK strongly advises to ALWAYS consult your clinical team before taking ANY supplements.

Forum rules
No promotional materials, no obvious advertising of any products.Contributors must limit their messages to their own experience and not recommend any supplements to other readers.MDS UK advises to follow a healthy diet as per our Nutrition Factsheet - and does NOT endorse nor recommend any particular supplements mentioned in the messages below.MDS patients MUST seek advice from their haematology clinical team before using any supplements.

Hi WinnieI don't have any experience of vit D but I did recently have a it of a break through with my own insomnia and joint pain issues. I had been getting really fed up with not sleeping, my friends daughter was the same, she got a sleep monitor and found she had actually been getting sleep after all, I did the same and Lo and behold I too was sleeping but didn't realise it, since seeing this on a screen and watching it for over a week now I know I have felt worse because I didn't think I had slept, so now, although when I wake up I think I have had a bad night I can see I did not, and this has lifted my mood and I have felt better during the day. The same monitor also monitors steps taken during the day and I have been trying to up my steps too and I have found my knee joints no where near as painful since I started being more mobile. Hope this helpsBest wishesMollyXxxxx

Thanks Molly,I have finally got onto the GP referral to the gym, I requested this inJuly and they kept forgetting to do the paperwork. Been going now twice a week and definitely feeling benefit . I do have problems with sleeping because pain wakes me up. I am tending to take pain relief in the night to help. Recent MRIScan confirmed I have problems with my spine. I also have arthritic joints., and tendonopathy in both shoulders. , injection in shoulder joints helps but the relief does not last. First time it lasted for 6 months the second time only a couple of months. But I remain positive and keep at my gym work. Thanks for your reply.All the best, love and hugs,Winnie